This Is Why We Need More People to Be Aware of Schizoaffective Disorder

At 20, my diagnosis was changed from bipolar disorder to schizoaffective disorder. For a few minutes, all I heard was the beginning of the word “schizo.” Was the psychiatrist saying I had schizophrenia? I was confused; I was told at 14 that schizophrenia had been ruled out, and they diagnosed me with bipolar. I felt I was aware of most mental illnesses that existed, mainly because I had been assessed for most of them, but that day I was proven wrong. I found myself having no idea about what I was being diagnosed with.

The psychiatrist gave me a very swift explanation — that schizoaffective disorder was, to put it simply, a combination of schizophrenia, its delusions, hallucinations and disorganized thinking, with the mood disorder symptoms that come under bipolar. I was told my current medication fitted my new diagnosis and no changes needed to be made, just to monitor my paranoia. That was it; no leaflet no further explanation. It was up to me to explore the internet for answers, which is never a good idea as I’m sure everyone will know.

Yet even online, there seemed to be less information on schizoaffective disorder, with many out there just trying to direct me to unrelated pages. I turned to YouTube and searched for Facebook groups only to find the same thing; there were very few vloggers or pages for me to relate to in comparison to other more well-known mental illnesses. Such people and groups can be like liquid gold when you crave to connect with people living your experiences and getting through it, giving life hacks and advice on the bad days. I wasn’t short of this for my depression and anxiety, but I wanted someone who understood everything that comes with schizoaffective disorder. While I could watch a vlogger with bipolar or read a fact sheet on schizophrenia to understand my symptoms better, neither is my diagnosis. Schizoaffective disorder has its own unique criteria and problems, with its own unique solutions.

I have found, when filling out forms online, that schizoaffective disorder is frequently not listed. When the only option is selecting just one illness, I am faced with the dilemma of what to choose. This may not be so bad in instances where my exact diagnosis being known is not as important. However, when it is, what am I expected to do? Do I choose bipolar, schizophrenia, depression, or do I choose one and write a comment somewhere if there’s an option? Whatever I choose won’t be correct. Sometimes, it’s bad enough having to disclose your illness in fear of being unfairly looked upon, but it doesn’t need to be made even more awkward. Sometimes, it almost feels like your doctor has made up your illness because they can’t decide between the two. That’s why you don’t see it listed with other illnesses or others haven’t heard of it, but then you worry you’re being paranoid.

My frustration was further felt when other medical professionals did not know what my mental illness was. I can recall one appointment when I had to correct my doctor five times, continuously, as she tried to write in my notes that my diagnosis was schizophrenia. Eventually, after countless bewildered looks, she erased what she put and didn’t include my mental health diagnosis in my clinic letter. This was not an isolated case, with some doctors simply putting my old bipolar diagnosis in my new notes, not knowing there was a difference; that yes, I still had the mood swings, but the constant paranoid delusions went beyond bipolar because I have schizoaffective disorder. It is understandable that medical professionals outside the realm of psychiatry and psychology may not have an in-depth knowledge of mental health; however, is it too much to ask for even basic knowledge of mental illnesses outside of depression and anxiety? Not just schizoaffective disorder, but others such borderline personality disorder (BPD) and dissociative disorders, which are further examples of misunderstood illnesses where clarity is so, so important.

Every mental illness needs to be understood; greater understanding brings better treatment and less stigma. However, sometimes it feels like some mental illnesses are left in the shadows. This puts survivors at a disadvantage, being left to Google symptoms, lack of general awareness and having to explain your illness to people you thought you wouldn’t have to; it all adds up to prolong the problem. This all represents a wider problem in mental health; the severity of mental illness is still not recognized widely enough. It is not OK for people to not be clear about their mental health.